Living with Lupus: creating a new normal

Today, through this article, I want to commemorate World Lupus Day. World Lupus Day is “celebrated” yearly on May 10th to raise awareness about Lupus. By sharing my own experience, I’d like to raise awareness, increase understanding, and provide anyone who may be interested, with some tips on having to create a new normal- which might be a reality for most of us now in having to create a new normal during a global health crisis.

Below, I’ve outlined what has helped me as a person who has been diagnosed with Systemic lupus erythematosus (SLE).

What is Lupus? “Lupus is defined as a complex autoimmune disorder that can affect any organ system in the body. Lupus develops when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many body systems — including your heart, kidneys, joints, skin, blood cells, brain, and lungs. Lupus is a chronic disease that does not have a cure at this time.”

From the definition and onset of the disease itself, three main facts solidified themselves in my head:

• Lupus can affect any organ in the body.
• Lupus develops when your immune system attacks your own tissue and organs.
• It is a chronic disease that doesn’t have a cure.

Although I had read about Lupus and understood it from an intellectual perspective, I kept telling myself: “I’m going to recover”. I kept asking doctors for an average time until full recovery, I wanted to “go back to normal”. Doctors never answered the question the way I was expecting them to, so I decided it was best to look further and get in touch with other people who had been diagnosed with Lupus. After reaching out and having multiple conversations with Lupus patients, I finally realized there is no going back to normal. I finally got to understand that I had to build up my new normal.

Shortly after I was diagnosed, I began taking corticosteroids and other medications. The side effects kicked-in quickly. My face and stomach swole; I couldn’t sleep much at night as my heart was beating extremely fast, and I was sweating buckets. Mood swings, depression, fatigue… The term I used to describe it was me being in the “zombie” state. While the zombie state was challenging, it allowed me to stop, and question what my beliefs, values, and priorities were in life. It made me realize that before the new normal would set in, I had to let go.

One of the first pictures taken during our annual company retreat, 2019. As you can see, my face here is more swollen than the first picture due to the corticosteroids that I’ve been taking.

Question your beliefs

Whenever I was feeling physically tired, it dawned on me how much I’ve demanded from my body over the years. Having 12 to 15 hour-long days was perfectly normal to me; I was a student-athlete, so in school and university I was studying and training every day. In fact, I began training for sports every day since I was 9 years old. But what was going through my mind? I was always pursuing a clear objective, winning a tournament, doing my best in the Colombian national soccer team, earning a scholarship.

When I eventually left soccer, it was still the same mindset, but mostly focussed on work. I started as a Voice Actors Agent for VoiceBunny, and I always wanted to start my own business so I jumped right into every challenge I was presented with. By the time my diagnose came in early 2019, I was the CEO of Bunny Studio whilst pursuing a master's in Gestalt Psychology. So, in fact, I did meet my initial objective and learned as much as possible, but after being diagnosed, I came to realize that I was extremely exhausted.

I never took the time to appreciate what I had, because I was always looking forward to the next goal. Even more shocking, was spending my time demanding my brain and body to keep up with said goals, and never made room for taking care of myself. Deep down, I thought people around me liked and loved me because of what I did.

Only when I stopped working so hard towards my next goal, due to Lupus, and received love from people around me, I was able to internalize that people loved me because of who I am and not for what I do. That was just one example, but I did find myself thinking things like “you have to be strong”, or “you can’t be vulnerable”. That is not true for me anymore.

Once you question your beliefs about yourself, it is important to decide whether you believe it or not, and if you want to keep carrying those beliefs moving forward.

Question your priorities

When we go through important life events, we tend to wind down back to essentials. Being diagnosed with Lupus was definitely an important life event for me. It allowed me to review the priorities around me. I used to put other people’s needs first, and leave my own personal wishes, desires, and priorities last. So I decided that my physical, mental, and spiritual health should become my top priorities. It was important to establish my new priorities, but even more so to openly talk about them with my family, my partner, and my boss (in my case the board of directors of Bunny Studio). This also taught me that I don’t have to figure out everything right away. Instead, I worked with all of them in different ways to build my new normal based on my new needs and priorities.

Allow yourself to feel

I usually didn’t have the time or the need to stop and feel. Feel my body, my emotions. In fact, my body gave me a lot of signs of tiredness and stress, but I was not paying attention to them. When I got diagnosed, it was important for me to allow myself to feel sad. Usually, the first reaction I had was to get distracted because “you’re not supposed to cry”. But a mix of me challenging my old beliefs, medicine that lead me into a depression, and physical tiredness allowed me to finally surrender. To surrender and feel ashamed for not putting myself first, for not taking good care of myself. The grief of losing that invulnerable and idealized idea of myself, to surrender to a new me who feels pain, weakness, emotions, and feels scared about the changes that this new normal could bring. Surrender to Lupus itself and open up to its message. From the conversations I had with people diagnosed with Lupus, all of them mentioned that allowing themselves to surrender was the key to later transformation.

Giving up control

Lupus has taught me to give up control. I used to think I could control everything: my schedule, my mood, my body, my emotions. Lupus brings a lot of uncertainty; it can affect different organs in your body, so you have to go in for constant check-ups. You don’t really know if it is going to react well to corticosteroids or how long the process is going to take, you don’t really know when the next flare-up will happen or exactly why. You don’t know whether you are going to have a “good” or “bad” day tomorrow. If you are going to have enough energy to complete what you planned for.

It was extremely frustrating for me to go from planning everything to having so much uncertainty. My brain was the leader and organizer of my entire life, and it turns out “she” was very selfish, “she” never asked if the body could manage all the tasks. Lupus changed that, and now my body is the one who leads; through the entire day, I try to be connected with my body and trust her over my brain. Further on, I will explain how I set up expectations and helped those around me in understanding and being prepared for it.

Leading a workshop when I was still CEO of Bunny Studio during our annual company retreat, 2018.

Acceptance

Acceptance is not easy, I used to think that acceptance meant resigning yourself to it. I found myself fighting against such an idea; Lupus was not the exception. My first reaction was to fight Lupus and what it meant. Initially, I saw Lupus as my enemy. It was making me feel weak, unreliable, incapable of doing anything. I was feeling physical and emotional pain, but Lupus was only mirroring an internal conflict between two opposing sides of myself: the warrior who can do it all and will take over the world, and the peacemaker who doesn’t want to fight anybody, only to love. One that wants to do everything now and only trusts its rational mind; and the one who trusts life and its own body and emotions. It took careful introspection and emotional work to accept that Lupus is just an emissary that came to tell me that I’m, in fact, both.

Long ago I was rejecting and bullying my peacemaker, my body, and myself. And it was not about accepting Lupus itself, but about accepting myself as both the peacemaker and the warrior. Accepting that one day I can wake up to be a warrior and take over the world and the next day I will just take care of myself and pay attention to my body; that I do trust my body and I do trust life. Accepting that I need to be compassionate and loving with myself and that doing so doesn’t make me any less of a warrior.

The new normal

The following are actions and tips I believe were key for me when building “my new normal”, which was mainly adjusting to my new reality, priorities, and beliefs. If you are going through a difficult period in which you are being forced to create your new normal, I hope what has helped me, will help you too.

Emotional support

When diagnosed, I continued with my master's in Gestalt Psychology. The interviews I carried out with Lupus patients were part of my thesis before graduating as a Gestaltist after four years of studying. The main conclusion was that, while all of the patients eventually did change their habits and mindsets to have a better lifestyle, it took longer for those people who did not have access to emotional support or any other emotional resources. In my own experience, emotional support was key when I was first diagnosed, and through my zombie stage as well. It was also key to figure out my new normal and achieving a much healthier lifestyle.

Different people prefer various types of emotional support. While Gestalt worked for me, I would recommend anyone who has Lupus to reach out whatever you feel most comfortable with: a therapist, counselor, or coach. They can support you and guide you during your entire process. Lupus patients have to go through a lot, and building support networks will be essential. You can also join lupus communities and make friends; having someone who understands how you feel is priceless during hard times.

• Get emotional support (therapist, coach, counselor).
• Accept that some days you won’t be able to work as you used to and learning to be ok with that.
• Allow yourself to disconnect from the routine and work without feeling guilty.
• Join Lupus communities and talk to people who have been diagnosed with Lupus. You are not alone!
• Have at least one Lupus friend with whom you can talk openly about what is happening in your life.
• Communicate and work with the people closest to you. (see: relationships)
• Connect with yourself and your purpose. Having a purpose, and being connected with yourself helps you go through the tough times and decide what’s best for you.

Physical health

Building a loving and caring relationship with yourself can be translated into actions that you enjoy and will help you keep your stress levels at a minimum.

• Take time for yourself when starting and ending your day (you can meditate, or just sit and try to connect with your body).
• Exercise. I started off by doing a small routine one day a week and then built it up to four days a week.
• Take breaks, maybe even take a nap in the middle of the day. I used to push myself into finishing all my tasks, even when I was tired, by telling myself that I would rest afterward. That was never the case. I always had more work waiting for me and never allowed myself to rest. Now I believe it is better to rest whenever I feel tired because when I push myself too hard, my body will shut down and I usually need one or two days of total rest to recover.
• Take on activities that improve your health. In my case, I started getting a Thai Yoga Massage at least once a week; it helps me relax, boosts my energy, and it reduces the pain I usually feel in my joints and muscles as well. It can also alleviate any bruises and improve the range of motion of my body.
• Food habits are also very important; I used to eat whatever was the fastest option for me. After being diagnosed I started eating organic food and cooking at home instead of ordering takeout. I realized that eating fish like salmon and tuna, as well as vegetables do have a positive impact on my body and energy levels.

Personal Relationships

Managing relationships is very important as Lupus indirectly affects those around us.

• Let other people see you while taking care of yourself. One of the hardest things for me was letting people “see me” while I was in my zombie stage. I felt physically and emotionally vulnerable. I couldn’t even recognize myself, I felt ugly; I kept telling myself “I don’t want anyone’s pity”, when in fact I was scared of letting others “see me”; I kept on saying “ I do not need anyone to take care of me” when in fact, I was afraid of letting my family, my partner, and friends take care of me. When I finally let them in I realized that it was not pity, it was love. I did need them. Do not push yourself into letting everyone in at once, nor let people in before you are ready. It is a natural process, so don’t push it.
• Use the spoon theory to explain to people that you have limited energy. Set expectations that you may have to cancel plans at the last minute, and encourage spontaneous plans as well. Make sure to explain that you can’t be exposed to the sun and while in treatment you can’t be around crowds.
• Communicate your new priorities to your family and friends. Have open conversations about what you want, what you need, and how they can help. We do have expectations about parents, partners, and friends, but most of the time we expect them to magically know what we want or need. Communicating those expectations and needs is important; although it doesn’t mean that we will get exactly what we ask for.
• Put yourself first! It’s likely that those around you who are not used to it will resist it. You might have to put some distance to take care of yourself. Even if you feel guilty or selfish, do it. No matter how hard it is, do it! Those who really love you will understand and support you.
• Make sure you don’t put all of the pressure on your loved ones, as it can be hard for them to fully understand what you’re going through. It can be too much. That is why it is important to seek emotional support through professional advice and people who have gone through the same experiences.

How to work with your employer

One of the hardest topics for Lupus patients is uncertainty when it comes to working. Sadly, most of the people I spoke with ended up being fired from their jobs, quit because they were bullied by their peers (or even superiors), or simply quit because they can’t handle the amount of stress and work they were used to. Fortunately for me, I was privileged enough to be the CEO of a company, but even then, my first thought was “I won’t be able to handle this anymore”. I thought about quitting. But thanks to my doctor’s advice, I didn’t rush into resigning but instead I started a conversation with my boss, the board of directors.

Here’s my advice:

• Work on your career plan with your leaders. Lupus is likely to change your perspectives and long-term goals, so take the time to align with your purpose and reflect that in your career plan. Communicate with your superiors about Lupus and your new priorities. It is important to ask yourself whether or not your current job will allow you to adjust to your “new normal” while being open about it. In my specific case, after understanding that one of the things that can trigger a drop in my wellbeing is the amount of stress I go through, I realized being the CEO of the company wasn’t the best fit for me. It was not good for my own health and it was not good for the company to have a CEO that was on medical leave for several months.
• Work along with your HR manager on a plan on how to slowly come back and incorporate yourself back into your responsibilities. If possible start trying to work towards a future where you can manage your own time.

You can take your experience as a transformation point for your career. Get involved in helping others. Think about your strengths and how you can contribute to your new normal. Ask yourself the following questions:

• What are my competative advantages?
• What skills does the world/ your organization/ your team want and need?

In my case, I worked in Product and Operations pretty much since I started in the company seven years ago. I also know our platform and algorithms by heart. So after speaking with our board, we determined that I could move from CEO to CTO and focus on where I bring the most value to the company.

To come up with an efficient schedule and make the most out of your time ask yourself:

• When are you the most productive? (Morning, afternoon, night)
• When do ideas come to you? (Morning, afternoon, night)
• What things aren’t as important for you? Whatever it is, try to turn it into an easy routine so you don’t have to dwell on it too long. It will help reduce the cognitive load. For example, if you don’t mind what you have for breakfast, you can eat the same every day.

Build your schedule around those answers and also keep into account

• Prepare/revise your schedule the night before and make sure all of your events have a purpose to make use of your time (and energy) in the most effective way.
• Lock time for a contingency, as you will always have them. We usually tend to address them in our personal time.
• Divide your big goals into smaller ones, and proactively revise how much time you spend on each of them.
• Track how much time you spend responding to other people’s priorities instead of your own.
• Sleep is the only area where you should not cut back on, sleep at least 8 hours. Less than 7 hours of sleep will affect your performance and increase your tiredness; several studies have shown that you will not notice that your performance is decreasing, so that is why most people do it. You also don’t want to feel tired and push yourself too hard or you will have to spend entire days recovering.
• Plan on having days off to rest and go to medical appointments.
• Plan on having at least an hour and a half or two hours for your lunch break; build your schedule around your most productive hours, where ideas usually come to you. Leave the other hours for meetings.
• Actively pursue your goals each day.
• Make sure you advance in your goals and find a system for you to keep track of your achievements.
• Don’t passively respond to others, but instead practice proactive, descriptive, and contextual communication. If you don’t have an answer, simply say so.
• Learn to say ‘no’ whenever you believe you can’t do it.

Remove unnecessary dependencies

Remove as many dependencies as possible. You will likely have to take a day to recover, go get tests, and then rest. If you have a flare-up you will have to take time to recover. Removing dependencies becomes essential so people get things done whenever you have to be absent. Of course, that doesn’t apply for all types of jobs and positions.

• Review your team structure and adjust it so you can delegate.
• Build clear decision-making and accountability processes, you can use the DARCI framework which is similar to RACI but includes decision making. Make sure your team knows what decisions can be made without you and who will be the person in charge in case you are out.
• Give visibility to your projects by having clear processes, clear documentation, and roadmaps so anyone can easily take over or know where you are at.

Reduce your number of meetings

Meetings usually take a big share of your time if you are a leader, so revise the number of meetings and the length of those meetings. Also, revise the nature of meetings; meetings should be for:

• debating issues and brainstorming;
• negotiating and resolving conflicts;
• meeting clients or associates for the first time;
• visually showcasing pages and receiving quick feedback;
• building team spirit and alignment;
• celebrating wins;
• performance reviews;
• personal feedback;

Exclude yourself and your team members from unnecessary meetings. You can say no to a meeting if you don’t think it is relevant. It is important to understand when something is contiguous but irrelevant to you.

• A meeting should not be set for merely exchanging information.
• A meeting should not be set just because it is a routine.
• No meeting should last more than 40 min.

Before starting a good meeting, everyone should have the agenda with the purpose/objective of the meeting, as well as the topics to discuss. Everyone should read the material in advance, if applicable. Send the material with at least two days of advance if it’s short and at least a week or two if the reading material is long. This will allow you to make use of your time more efficiently.

Whether you can implement some of this advice or not, the most important thing is to build new foundations around your own beliefs, priorities, and purpose. Building up your new normal around taking care of yourself, making health your first priority, and being explicit and intentional about where you want to go and why.

For me, lupus presented itself as an opportunity to reinvent myself, to accept myself, and to build a different and hopefully more meaningful and uplifting life. It taught me to be more present, to value my time and energy much more, to enjoy myself and those around me whenever I have the time and energy to share moments with others. So as crazy as it might sound today, I’m grateful for my experience with lupus. I see it as a teacher that will be there with me as long as I need to be reminded that I have to be first.